Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Monthly Archives: February 2014

I got assigned to the Curriculum and Scholarships committee in my department. I was not sure *why*–I, unlike my colleagues, do not have a degree in Theatre. I don’t even have a degree in the arts–I have a BA in Government and a Master of Public Administration. I like to remind my boss that even though I am the most qualified person to ever be Department Head, I can’t be because I can’t become tenured faculty. It turns out it was an interesting meeting and the Scenic Designer, whom I like very much and who would be described as irascible and grouchy and intimidating by many seemed to think I had intelligent things to say. At one point he told me that he would be happy for me, or the resident designer, to speak to a class we are talking about creating. I thought, “Right. I’m not the resident designer, so who would let me come in and talk about design?”

It kind of hit me the next day; a day when I came home early to work in my studio and instead did the things I needed to do and then had to soak in a hot tub in the hopes of my left ankle and wrist calming down since I could barely use either. I was so angry about losing the time to create, and then thinking about how hard it is, at 44, to be losing things so quickly. I had no idea, in high school, that there was such a thing as Costume Design. I didn’t sew yet, and I thought that Theater was what all my annoying actor friends did to get attention.

I was unaware of costume design or my talent for it until 3.5 years ago when I got this job. Now, I look at our student designers, and hear about the grad schools competing for them, and I think, “I could really do this. I could go to grad school and get a job as a Costume Designer, and I’d be really good at it.” Two of my three children are adults, and the last one at home is 12 going on 37 anyway. I could go school and become competitive in this field.

Have you ever done something that you knew you were really, really good at? Where you knew you had a unique perspective and stellar skills and that other people found you amazing? Finally, in my life, I found that. But I found it too late. I cannot be a costume designer. I cannot have a national reputation or make good money or be more important than my husband. I have to fade away, now, before I’ve come anywhere near my potential.

I can’t get a theatre degree when I can’t participate in two-thirds of the education; I could not do Stage Craft because I can’t lift anything over ten pounds or carry anything or hoist anything. I couldn’t do lighting because I can’t carry anything or lift anything or climb anything. I can’t work on a crew because I can’t manage the hours, or haul the shit and lift the shit and run up and down the stairs.

Yesterday, sitting in the tub in broad daylight and then getting dressed in “comfortable” clothes before it was even dinner time, I found myself profoundly sad that I will not get to realize my abilities. I won’t get another turn, I won’t get better. I will stay where I am until I can’t even stay there any longer; a costume shop manager in Southern NM who makes a pittance that is less than what they take out of my husband’s paycheck. I started crying at the dinner table explaining this to my husband, who feels helpless to do anything because he is. There’s nothing to be done.

I am utterly phobic about death, I cannot stand the idea that I will ever have to stop. I cannot bear the idea of ceasing, of no longer being or creating or making things or even thinking. I am not religious but hope for an afterlife where I know there is none. I cannot understand why I should have the skills and talents that I have and to have arrived at the really exciting point only to have to stop so far short of what I could have achieved. Not turned away for a time, but forever. I have never wanted to be ordinary, or unnoticed. To quote the play that we are running right now at our theater, “I would never have been happy being just a person.”

I didn’t know what I wanted to be when I grew up, even after I grew up. I didn’t know who I could be for a long time; and had not known that I was, actually, a costumer. I am on the very edge of the greatest thing I could ever imagine doing, and I am deeply afraid that I will go no further. For years I’ve been convinced that I failed a set of psychological tests because when they asked if I thought I would be famous, I said yes. I’ve always been sure that I shouldn’t have said that, but some people do manage it. Maybe it’s just wrong to think so, or plan on it, or expect it. It’s probably wrong to want it, but I did and do want to be known as really good at something longer than the few minutes that I get to be on this planet.

Physically, though, I will not be able to do this. I will not be strong enough or pain free enough or healthy enough. It is so unfair, and my path right now has stopped me so that I might contemplate that fact. It’s not a happy place, but it’s the only one I can be in right now.

Splinting; or, as I refer to it, gaining an exoskeleton, is the main option for relief of joint pain for people with EDS. I imagine someday scientists and physicians will look back and shake their heads at the primitiveness of such things, although maybe I’m just hoping that’s the case, and that maybe in my lifetime they’ll come up with something better. The first splinting I was willing to accept are my silver ring splints.

But, little thing; the one for my right thumb gets caught in my snips, scissors that are used throughout the garment construction process.

And, little thing; it would close down during the day as I wore it, and needed to be pushed back to open each time I took it off.

Little thing; it broke. They cost $81 each. Now I’m only wearing nine of the ten.

Next came splints for my CMC joints, which are at the base of the thumb. The first set were velcro contraptions with an insert that was heated and then molded to my hand. I would love to know what my insurance paid for them.

Little thing; velcro snags fabric like crazy, be that fabric I am using to make something or my own clothing.

Little thing; those splints cut my dexterity by about half, and both provided no wrist support and prevented me wearing any wrist supports.

I researched and found these (corollary finding: my occupational therapist at the time was not very knowledgeable of EDS, sewing, or splinting options) which have a less challenging form of velcro and a low profile that allows me to splint my wrists, too, if needed.

Little thing; they cost $75 each, and since I ordered them myself rather than through my OT, that’s out of my pocket, not my insurance.

For awhile they had me sleeping in wrist splints due to peripheral neuropathy in my hands that is sometimes indicative of carpal tunnel, and sometimes of ulnar nerve issues.

Little thing; it’s hard to sleep with big velcro braces on your wrists. Also, they are very hard to work in due to Velcro, clumsiness and general hideousness.

Sometimes I have to wear those splints during the day. I hurt my left wrist somehow last weekend, and I called my PCP to set up an xray. He asked if I was splinting and I said, dutifully and resentfully, YESssss. We both knew that was probably all we could do, although at that time I was suspecting I would find myself with a fully immobilized left wrist/hand by the end of the week.

Little thing: my PCP hasn’t ordered the xray yet.

Little thing: my wrist doesn’t hurt as badly as it did, so: confused.

Little kind of big thing: I have become allergic to my wrist splint, and wearing it for 12 hours resulted in hives. Left longer, those guys turn into blisters and raw sores. Perfect.

Readers of the old blog may recall my adventures in the knee brace arena, which I referred to Mystery Shopping Club as my insurance paid my Physical Therapist to search blindly through catalogs for various products that either weren’t right for me or, as we found out, caused hives, blisters and sores within hours of putting the thing on. I took one more stab at knee splint on my own this summer, and surprise; I am unable to wear it because it causes hives.

Little thing; take modest amounts of cash–$35 here, $50 there–and flush it down the toilet. No hives that way, at least.

Naturally, it got even more interesting the next day, when the following email arrived in my work inbox (the author’s name has been redacted and substituted with That Guy Everyone Hates (TGEH):

Hello, [me] I never responded last year to the facebook message you sent me. I gave up on that after reading what you wrote because you invited no response from me, and were so final in stating that you were ending our friendship and cutting off all communication.

Obviously, this was very distressing to me, and came as a complete shock because you never implied there was the least problem between us. Our last meeting was when you, [husband], and I spoke at [a gallery] during the art ramble. I thought we had a very fun, enjoyable conversation, carried out in the middle of the room surrounded by art ramble attendees. Certainly nothing you said to me implied otherwise. [Your husband] also did not seem upset, though you told me in your message that he was. You even brought up your risque Zoomanity [sic] story. Why, if I was making you so uncomfortable, as you implied?

How sad all of this was because I appreciated our friendship so much, and admired your work so much. I nominated you two times to become a member of the [local art club], but you even chose to demean that effort on my part in your message. Why would you treat someone who had been such a good friend and supporter as you did me? I am still in the dark.

Yet, I had hoped to revive our friendship at some point. When I might happen to run into you I was going to say: “You know, do you think we could begin to rebuild our friendship, Guenevere? It really meant a lot to me.” The opportunity had not yet arisen.

But now, you have made a demeaning, damaging, untrue, and possibly libelous comment about me yesterday on facebook. In response to an off hand comment referring to Anna Wintour, you say I am a “sexist pig”. Did you ever happen to see The Devil Wears Prada? It satirically and negatively portrays a character based on her. Are people who criticize Anna Wintour sexist pigs? of course, not. She is criticized, ridiculed, mocked, and yet, admired all around the world. But… you chose to lash out at me. That would be fine, but what you then said and implied about me is not.

I need you to immediately remove your posted comment calling me a “sexist pig”, and I need you to post a comment at that same post page a withdrawal of your comment about me being a sexist pig, and that you apologize sincerely and without reservation for calling me a “sexist pig”.

I am a highly accomplished professional, and have made many contributions to our arts community. This is widely acknowledged. I have worked too hard to have someone damage my reputation without cause, especially over something so trivial as a joking comment about the editor of Vogue magazine.

I have made a substantial donation to the [university] theater department this year, and I am about to make two more. I do not believe your public comments about me would be at all appreciated or understood by the department administration.

Let’s please bring this silly feud to an end, Guenevere. We are both accomplished professionals with busy schedules and work to be done. Despite any disagreements I still hold some hope that at some point in the future we can again be friends.

Sincerely –

TGEH

Brings a tear to the eye, doesn’t it? How mean I am. How sad he is. How confused by my objections to him. That, right there, is an entire lesson in Women’s Studies 101: Men Hate You. Also, that little implied threat about my job. Cute.

I replied:

Guy Everyone Hates,

I would greatly regret doing anything to jeopardize public support of my department, so I have removed my comment and have notified my Department Chair of the situation and my lapse of judgement, now corrected. I’m loathe to get into a “I’ll apologize when you apologize” sort of exchange, so perhaps we can leave it at that. I regret the choice of public name-calling, but it appeared to me to show up on a conversation that was between myself and [another friend] and not the FB population at large, and I did not pause and consider if there were some other way by which you could “see” my page–as we are not FB Friends, I thought it wouldn’t be visible to you. Given our history, I felt you had no place in the conversation and I didn’t find your comment appropriate.

Two years ago, at the point at which your treatment of me offended me, I notified you of my feelings. I am not sure why it is hard to believe that I felt embarrassed and humiliated by your harassing commentary, but I was, and I reached a point where I was angry with you about it. I felt that you assumed a liberty and intimacy with me that was unwarranted by what I considered to be a professional relationship. Your choice not to respond or apologize, I felt, told me all I really needed to know about your opinion on the subject. I fail to see why you are confused; you offended me, I told you what and why–what is there to be in the dark about?

I don’t, actually, consider it a feud. I consider it choosing not to spend time with someone who has made me uncomfortable. But, as I stated above, I will avoid any sort of public statements where social media is concerned, and I agree that it’s not appropriate. I’m happy to be civil, which I have been until this incident last night, and which I will rededicate myself to in the future.

I then forwarded the exchange to my Department Chair. He wrote the following :

Just an FYI… TGEH has never donated money.

Naturally. My sense is this; TGEH is teetering on the edge of appearing to be continuing to harass me after being clearly informed that his behavior was unwelcome. He has now added threatening my job, and now my boss has the chain of events in writing.

I hope that he just leaves me alone as I’ve asked, since the upshot of this was simply that I find his behavior offensive and want nothing to do with him. Seems pretty simple to me.

I think it’s safe to say that we all have things that we hold up to ourselves as things we will never do or actions we will never take that are actually a way of saying, “I am so afraid that I will have to do that” or “I am so afraid that will happen to me and I’ll be like people I used to think I was very, very different from and would not choose to be.”

One of mine is shoes. I will never wear ugly shoes. By “ugly” I mean shoes that are closed by means of velcro, or marketed as stable, secure or orthopedic. SASS shoes. Sneakers with a dress. I’ll never do that. I may well be wearing supports for my ankles, and orthotics in my boots, but I draw the line in the sand at sneakers or SASS or grandma shoes. I have one pair of boots by Earth Shoes and they are furry and muklukk-y and I only wear them at home, never out. But if you came by, you wouldn’t think I’d given up and gone to the dark side. I have given up heels for anything other than “evening out” type appearances already, so I feel like I’ve made enough concessions.

On Thursday I wore a pair of boots with a “reasonable” 1.5″ heel, and my left ankle felt like it was being stabbed all day, and the balls of my feet hurt, and the ankle supports rubbed my heels and my left ankle ached in competition with my left hip.

Perversely, I prefer that to what I am terrified of, which is becoming less attractive, less fabulous; becoming clunky and old and infirm. So sure, I’ll have to stare at the ground to make sure I don’t fall, and I’ll stand in the elevator and curse my aching joints, but someone will tell me that I am wearing great shoes and somehow, that is preferable to me than walking comfortably about in a pair of crepe-soled loafers that are style-free but stable.

Because, it’s not just the shoes. It’s the loss of myself-the potential of myself as much as the actuality of myself. I think those shoes look stupid and clumsy and gross and I notice when people wear them, and I fear that I will have to, as well, someday. So I would be disingenuous to say that I don’t judge people for the shoes they wear, but it would also be untrue that it’s that direct–I have never wanted to rush gratefully into middle age and settle into clothes that aren’t fashionable, but I don’t pick my friends based on how they dress, either. I am determined, committed, maybe even obsessed with not “giving up,” even as, maybe, a glimmer of a possible upside–or, not upside, but, relief– occasionally presents itself.

Invisible illness is a double-edged sword; one side allows me to appear as if there is absolutely nothing wrong with me. The other side, not a news flash, is that no one knows that there is something wrong with me. They might think my asking them to hold the door is affectation, the same as the ring splints (“Oh, she’s always wearing fabulous things that are over-the-top, those are just a new thing she’s into.”), or long skirts (always a big part of my look, now adapted semi-permanently in case the threatened knee brace materializes), or boots (they lend that edge of toughness to my girly-fem skirts) because they actually lend some ankle support. Surprise, I am not always in love with my combat boots.

It’s been a rotten weekend of having to cater to my body, which is just refusing to be in sync with me in any way, and at this moment it’s possible I’ll be wearing an ugly brace to work for my left wrist for the rest of the week, something I absolutely dread (it’s velcro, feel me?) and want to hide. It’s possible I’ll have moments, like last week, when I think that I might need to pop over to the ER and visit with them about my heart rate, or I’ll have to take a call from my PCP wherein I struggle not to cry because my emotions have decided I am not their master at the moment. How much do I not want to cry at work? SO FUCKING MUCH. So, so much. I’ve only done it once since all this started, and that was in my boss’s office behind a closed door.

Each time I get to a point where I accept something; okay, I will always sleep with a heating pad; okay, I need to take a lot of hot baths; okay, I need to wear the ring splints everyday; okay, I’ll wear the CMC splints for hand sewing, too; okay, I will try to pull open as few doors as possible; okay, I will file for official accommodations at work; I’ll be damned but there’s some other slew of things knocking on that door and I’ve barely gotten the current guests seated and it’s all I can do not to just have a screaming tantrum and take to my bed.

But you’re not going to know that from my shoes, unless you look at the two spikes on the heels of the black ones. They might tell you a little something about my mood right now.

Inasmuch as a straight person can fully support and advocate for the LGBTQ-community to receive full human rights, I feel I have done so. I have not shied away from stating my beliefs or defending the rights of many of my friends and acquaintances who are members of this group. I give money when I can, I give time when I can, I stand up where and when I can.

I am generally amazed by the fact that should I take a public stand as a feminist, the proverbial room grows quiet.

Tell a man, any man, that something they have said is sexist, and I am instantly Humorless, A Shrew, Too Uptight. The worst offenders, in my experience, are often gay men, who seem to think they *can’t* be sexist since they already don’t like women.

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Two years ago I told a local artist (ostensibly gay, although I can’t imagine anyone that doesn’t find the guy repulsive), that I would no longer tolerate his sexist, harassing behavior towards me. I told him in writing, after numerous public encounters wherein he would say inappropriate things, culminating in him turning to my husband, mid-conversation, and saying, “I’m sorry, I didn’t hear what you said, I was staring at your wife’s breasts.” I found this embarrassing. Humiliating. It was the straw the broke the camel’s back, and I emailed and said so.

I’ve told that story to many people who want me to take up their causes. They say, “Well, so-and-so’s just like that, ha ha, he doesn’t mean it.”

Yes. Yes, he does mean it. Men who behave like that DO mean it.

Tonight he popped up on something a mutual friend shared with me on Facebook, saying something that, as usual, he considered clever. I said, “Wow, you never pass up an opportunity to be a sexist pig, do you?”

He said: Good grief, Margaret. I had hoped you’d become a little more diplomatic in the last two years. My comment has nothing to do with you whatsoever. And, I am about as far from being a “sexist pig” as anyone could be. Your comment is totally out of line, and I think you are better than that.

FB is just the sound of crickets right now; no one will wade into that, and while I wish I had myself a posse of staunch feminists (hell, just regular, moderate feminists would do) to tell that jackass to shut up, that’s not the world we live in. (Here’s another gift of feminism thus far, too—Straight Men also won’t speak up, since those hairy, humorless, ugly feminists also killed chivalry–now we are alone! Just like we wanted! Except still targeted…whoops!).

I’ve elected not to reply, although he is baiting me with that “more diplomatic in two years”—yes, maybe I’ve gotten to where I blush and giggle when a man sexually harasses me in public instead of calling him out on it–I know it’s a losing battle, after all, and I should feel flattered that he even things my old fun bags are worth looking at!

Being a girl often is a losing battle, after all. The odds are against you.

I’ll leave you with this quote from Twisty Faster, a much stronger feminist than I:

“I allude to the impossible femininity tightrope upon which all women are constrained to do the butt-dance 24/7. We are required to demonstrate our degree of patriarchy-compliance through our constant struggle for the feminine ideal. Every facet of our behavior must be balanced just so. We can’t be dumb, but neither can we be intellectuals. We have to be sexy, but we can’t be slutty. We have to be child-like, but we have to raise children. We should be fun, but we can’t seem easy. We have to be demure, but not frigid (i.e. we can’t say yes, but we can’t say no). We have to obsess about our appearance, but we have to make it look like we don’t, lest we seem vain or crazy or pathetic.

The joke’s on us, though. The sweet spot, where all these stupid attributes intersect at some apex of feminine perfection, it doesn’t exist! The standards change from one minute to the next. The struggle is merely a diversion, imposed by the Global Accords Governing Fair Use of Women, the better to keep us under control.”

I have a lot of quilter cotton left from my purse-making business even now, over four years after I stopped the handbag madness. Some argue that quilter cottons are too stiff for garment sewing, but a trend using novelty prints in garment sewing is definitely emerging.

Given that, I whipped this up this weekend:

I’m very pleased with it even if it’s a bit brighter than my general tendencies. Now I just have to decide if I’ll keep it or list it on Etsy.

My physician asked me that today as we tried to sort through the current batch of health related issues.

I said, Well, I think it’s the insomnia, but…that’s influenced by the anxiety, and the heart rate stuff probably adds to those…and since I’ve given up on anything to help the chronic pain, I do really need to sleep in order to deal with that….trailing off, I finally said, “I don’t know.”

I had gone to see him a month ago because I was waking up at night, at around 2:00 or 3:00 am, with my heart pounding, sweating, and unable to go back to sleep. As usual, I had researched this on the Ehlers Danlos Foundation message boards. The complicating factor of P.O.T.S. made it all that much more interesting. Was it due to POTS? Or maybe perimenopause (I’m 44, after all)? What was causing which? Which was causing what? Furthermore, when I went to see him, my blood pressure was really high, and normally I have really low blood pressure. Really low, like 90/60. I was cooking along at 130/100 or something unnerving like that. My heart rate was also high, which happens to me often. I had experienced two migraines in the course of 3 months (most unwelcome, I would add), after an 8 year hiatus.

After some debate, he decided to try Amytriptilyne to help me sleep, prevent migraines and possibly even help with the general anxiety. He advised I start with 50 mg and then go up to 100, then 150. On the plus side, it helped me fall asleep and I have been able to discontinue a 17 year affair with Benadryl, and cut back on my nighttime alcohol consumption. Downside, my heart rate remained too high. I have an app on my phone (“The shit you say!” “No, I say, it’s amazing!”) to track my pulse, which is consistently between 100 and 120. When I went up to 100 mg of it, my pulse went up to 147, so I dropped back to 50 immediately. At that time we talked beta blockers but he was concerned I’d drop to where I’d end up in the ER due to fainting and dizziness.

Today, when I went back, my BP was more like my normal; 102/65, and I’ve had a few dizzy spells. My heart was continuing to race along like the Kentucky Derby, and therein was the problem. Go off the Amitriptilyne, he said. Slowly. Take a Xanex at night, instead, and go see the Cardiologist. “FML!”, I said, “The cardiologist declared me uninteresting but slender and attractive last time.” Well, my PCP countered, he might find you more interesting this time. “But am I still attractive?” I asked, sarcastically. He declined to answer (I should note that my PCP is a friend and the husband of a dear friend, so I can get away with having a personality).

The cardiologist’s office is near my PCP’s office, so I walked my referral on over. This office smells like my Grama’s bathroom used to smell, and I am not saying that in a complimentary fashion. My previous experience involved waiting for over and hour just to be told of my slender figure and uninteresting heart. I approach with strong resistance and low expectations. They can see me on February 28th, and I already know that I’ll land with high blood pressure and heart rate simply due to my general attitude. He’ll probably label me an angry feminist and withdraw his affections. Maybe he’ll also have something of meaning to offer, I don’t know. I rather expect to be punished with a Holter Monitor, and possibly a tilt test. Or, given this guy’s general attitude, maybe he’ll scorn my fancy diagnosis from my fancy geneticist and tell me I am simply a hysterical woman.

I’ve never, ever heard that from a male physician before.

Maybe *that’s* the main problem. Being dismissed due to gender and rarity of diagnosis.

The man and I took a much needed break last week, leaving Friday for Santa Fe and returning Monday. We rarely do this, and especially rarely when the getaway requires taking time off work, hiring someone to stay with the child (and the dogs, and the cat, and the gecko) and ignoring all that might have been done at home in favor of going somewhere else. We also cancelled something we had agreed to do because as it turned out, it was stressing us both out and we weren’t looking forward to it. It was as if prior to going away for a long weekend, we felt the need to also solve all pressing problems prior to leaving.

The Universe, in her wisdom, tested this approach with all her might. On Thursday, as I drifted joyfully about the house, choosing outfits and packing for the trip, I heard the dogs at the food bowls. Nothing unusual there, it’s just part of the background, their tags jangling against the bowls. Then, though, it turned into something else entirely, punctuated by the screaming of the very small dog and snarling from the large dog. The small dog is a Chihuahua named Boris (large Eastern European name for small Mexican dog), and he is at least 11 years old. The large dog is a mid-size Pit Bull named Trixie (for the girl sleuth, Trixie Belden), and she is the dog of my heart and about 5 years old.

I don’t know what happened exactly because I raced out of the room as soon as the screaming started and screamed myself at the big dog, who stopped (the small dog continuing to shriek like a smoke alarm that can’t be turned off). She stopped, she looked me in the eye, and then she swung around and piled right back into Boris, driving him into the wall, him still screaming as she had again gotten him by the neck. I did exactly what one is not supposed to do and dove into the middle of it, hitting Trixie in the face and screeching at her to stop. She dropped to her belly, hackles still up, and I grabbed Boris (who considered biting me, as he was scared and hurt) up off the ground and the child dragged Trixie to her crate.

So, problem number one: Canine Death Match. Gone was the joy of packing and in its place dread, fear and loathing.

Upon examination Boris appeared okay, but his neck was soggy and sore (we later found one small puncture wound, but that was all). We developed a plan to separate the dogs in our absence and revised the time we expected to leave, since Death Match precluded packing. We were very lucky that we weren’t taking one dog to be cremated and the other to be euthanized, and that fact shook us up.

The next morning we arose, again determined to have this weekend out of town. We promised ourselves we’d leave by 9:00 am. The child appeared and announced he felt like throwing up, which he proceeded to do. I felt robbed. I felt I was being cheated out of something I had almost gotten to grasp. This is not an uncommon ailment of this child, and it responds to stress, and it is always over pretty quickly. Sometimes mere hours after I’ve called him in sick to school, he is eating soup from a can and claiming to be starving. But then there’s the idea that I’d be a bad mother if I didn’t sit at home and watch him watch TV.

We arranged to have my mother check on him, and then the sitter would be there in the afternoon.

We went away. We felt a bit like we were escaping, we almost didn’t get out of there but at the last minute, we did.

It was entirely, completely, worth it. We returned to a child who hugged me at the door and waited an hour before telling me he wished I’d not come back with all my rules and demands. The dogs seemed to have buried the hatchet for the time being and were back to coexisting.

Sometimes, the harder it is to get away, the more you need to do it. If only to find that your absence won’t really devastate anyone, and the world will remain pretty much the way it was when you checked out.